Budesonide Quick Question

[Pebbledash]

I've just started my second "go" at Budesonide--three month course.

I completed the course originally one year ago. It worked beautifully from the word go, so much that I wondered whether I needed the full course. Unfortunately, half way through, I was diagnosed out of the blue with idiopathic peripheral neuropathy, a diagnosis that turned my world upside down--the positive effects of the budesonide were compromised, and my tummy returned to its usual mayhem, very likely exacerbated by the sheer degree of stress from months of diagnostic testing and uncertainty.

The last year has been awful. I've tried all kinds of alternative ways to bring my stomach under control. Nothing has worked. I have finally relented, and recently restarted Budesonide (my neuropathy remains a highly unpredictable, stressful condition).

So here is my quick question(!): I'm someone who likes to keep medicine in reserve until absolutely necessary--is there a limit to how many times one can take the Budesonide treatment before it loses its efficacy? Also, how long do gaps need to be between treatment?

Thanks, and sorry for the slightly longer than expected message.

Paul

[carolm]

Hi Paul- I’m sorry to hear about your peripheral neuropathy. Stress is always the ‘wild card’- we don’t know when it’s going to strike and what the impact will be. Even in remission stress will get my gut to react. Dealing with grief and loss is guaranteed to set off a flare for me.

Re: Budesonide-I don’t know that there’s a length of time in between prescriptions of Budesonide that makes it work better than another. I just know from personal experience and other's reports here that Budesonide seems less effective the second time around, so a full dose is often recommended. Some people stay on a maintenance dose of 3mg per day, then changing to every other day, after they complete a full course, and for some that ends the cycle of starting and stopping and getting a diminished return.

Hopefully someone with more experience on this topic will chime in.

Best wishes,
Carol

[Pebbledash]

Carol,

Thank you, thank you! This forum is an invaluable resource!

Very interesting information, particularly regarding the maintenance dose.

I also was suffering from grief in the last couple of years, capped off with the diagnosis of neuropathy. What I do know is that my colitis has become particularly challenging to moderate--it's just so damn unpredictable, and I have had enough of living my life around it, dashing off to the bathroom, leaking into my pants because I don't make it on time etc; I'm a teacher, and I just cannot live with this stress anymore.

From your knowledge of other members, how many times can people go back on to Budesonide if remission falters . . . what I mean, is that if it is less effective second time around, do people return to it later in life for a third, fourth, fifth go, and so on?

[tommyboywalker]

Hi Paul,

I can absolutely relate to your situation. I have Lymphocytic Microscopic Colitis and this past spring, I was also diagnosed with idiopathic polyneuropathy in my left foot. My right foot has Complex Regional Pain Syndrome so while we thought it was the CRPS spreading to the other limb, it looks like it is something different. Good grief for both of us, right??? But stress is a big deal with Microscopic Colitis.

As for Budesonide, I have a GI doctor who trained under their MC guru (Dr. Pardi) at the Mayo Clinic in Rochester MN. The taper technique we agreed upon was an extremely slow taper of the drug so as to allow plenty of time for healing and to avoid relapse.

I started with 3 capsules (9 mg) every day for 6 weeks (not 4 weeks which is what many go with). Then 2 capsules every day for another 6 weeks. Then 1 capsule every day for 6 weeks. Then 1 capsule every other day for 6 weeks. Then 1 capsule every third day for 6 weeks. Then 1 capsule every fourth day for 6 weeks and finally 1 capsule every fifth day for 6 weeks. This is NOT the standard taper protocol but is one that we believe has a better chance at long term success and my GI doctor and I are in lock step agreement on this. I'm now at the stage of 1 capsule every third day and it is going great. This very slow taper is something you may want to discuss with your GI doctor.

And I am also strictly gluten free and dairy free. Doing this is also (finally) the recommendation of the Mayo Clinic. The drug without diet changes has a much less chance of success in our opinion. After my Budesonide taper is complete, I will try a bit of dairy and see how that goes to see if I am lactose intolerant. I will also try some gluten as well to see if I can tolerate that. My GI doctor wants to test me for Celiac Sprue disease somewhere down the line but I have to have eaten gluten for a few weeks before he can effectively test for that. It is quite an adventure, isn't it.....

Best of luck to you and keep us updated!

[Pebbledash]

Hi Tommy,

Much obliged for your quick response--this is an amazing forum!!

I actually messaged my gastro before I got your message, on the back of Carol's reply; fortunately, my Kaiser docs are open to communication so I can follow-up with your ideas.

The last thing I want is what happened one year ago: the Budesonide was working wonders, then the neuropathy symptoms (followed by a battery of tests and diagnosis) appeared while I was still under treatment, and, boom, my watery diarrhea returned even before I had completed the end of the course. I don't want to think about it too much, but I do remember the stress of that time was unbelievable--the worst occasion to try to heal my over-sensitive gut.

I am a Celiac as well as having MC so already avoid gluten completely. I've tried everything to self-heal my gut, and nothing has resulted in a sustained recovery.

My dosage is: 3 x 3mg cap for 4 weeks, 2x cap for 4 weeks, and 1 for 4 weeks--so the standard, I guess. I can at least see if the final taper is lengthened . . . ?

By the way, I went without any treatment for my MC for about 6 years until I changed my consultant. I sometimes wonder if there is a connection with having an inflammed gut for so long and the development of my peripheral neuropathy . . . but really not worth over-thinking.

Cheers
Paul

[carolm]

Paul- I actually don’t know how often people go back on Budesonide because I’m willing to bet that by that third time (if not sooner) people opt for a maintenance dose. I know I would. I’m glad to hear that Mayo docs are considering this. There are members on this board that were doing a maintenance dose on their own years ago.
BTW- I was a school psychologist for 20 years and a clinical psych 14 years prior to that. I do know first-hand what teachers go through. I worked as a school psych for 5 more years after my diagnosis. I was in pretty sad shape that first year and even got sent home twice (out of kindness), by two separate principals because I was just so sick. That was a little humbling. At least I could sometimes flex my schedule. It would be extremely tough to be a teacher with active LC.

Re: peripheral neuropathy - I believe Tex also has peripheral neuropathy and if I recall correctly he mentioned he felt it was the result of the damage caused by long term gluten exposure because at the time we weren’t aware of gluten intolerance.

Tommy- the fact that your doc would want you to eat gluten just to take a test for celiac, when you already have LC and peripheral neuropathy.... makes my hair stand up. I get pointless suggestions from my GI doc too. My response was- does it matter if I have celiac? I have LC, it’s autoimmune so I’ll always have LC and I have no intention of eating gluten ever again. For some reason my GI doc thinks I should try gluten again. If I ever need a GI doc again, I’ll be shopping around.

Best of luck to both of you.
Carol

[Pebbledash]

Thanks again, Carol. There is so much information on these boards that it helps to have someone like you who can decipher the background noise. I really do think that some kind of minimal maintenance dose would work for me in the long run . . . I certainly cannot go on the way I have been going.

Regarding my teaching: fortunately, I teach college-level, though I was in secondary before. Truth be told, I wouldn't have been able to hold down a position with regular hours these years; I can work from home a lot and I also tend to not teach in the mornings, which is when my diarrhea is usually at its very worst.

That said, I can no longer tolerate living my life around my condition(s)--only last week I managed to not make it to the bathroom in time while at school. It's really too much and I have to take action. Honestly, over the years I have acclimatized myself from never really going anywhere or making appointments because I am afraid of the (not unlikely) scenario that I will not be able to control my bowels. To outsiders, I might look fairly normal, but, in reality, I have been living a half-life, surviving.

[carolm]

Paul- you are definitely in the right place because we are all working together to get our lives back. To live in that constant uncertainty and anxiety has been one of the toughest aspects of this disease for me. I was never an anxious person before I became ill. I hated scheduling activities with family or friends then having to cancel. However the longer I’ve been in remission and the longer I continue to follow the diet and heal, the less anxiety I feel about scheduling events. Now I am 85-90% sure I’ll be able to keep my plans. So it does get better.

It’s great that you can adjust your schedule. It’s fortunate you have that option now when you need it. Even at that, just being in any profession that is geared toward working with people is demanding. Your determination and planning will pay off. Pace yourself, and be aware of other factors like fatigue and seasonal allergies (if you are prone to those) as these can also throw your system off balance from time to time.
Keep in touch here too. We are all in this together.

Carol

[tex]

Re: peripheral neuropathy - I believe Tex also has peripheral neuropathy and if I recall correctly he mentioned he felt it was the result of the damage caused by long term gluten exposure because at the time we weren’t aware of gluten intolerance.

Carol is quite correct of course. I also believe that because I reacted so long, the extended malabsorption problem caused me to eventually run low on vitamin B-12 and this added to the neurological damage.

I agree with Carol that it's rather pointless to test for celiac disease when we already have a diagnosis of MC, because we're going to be sensitive to gluten for the rest of our lives, anyway. Because GI docs still don't understand MC, they don't realize that. Besides, they have no way to test for non-celiac gluten-senstivity, so when they get a negative result on a celiac screening test, it just adds to their confusion and they mistakenly insist that a negative celiac test result proves that the patient can't be gluten-sensitive. They're dead wrong. of course.

Tex

[brandy]

Tommy--Eating/testing gluten puts us at risk of relapse. This is not always immediate. Sometimes it is a tipping point.
Search "cheerios" on this forum. One former member tested one cheerio a day and kept adding cheerios per day as a test
(this was before cheerios were GF) until she started testing wheat based bagels. She did not relapse immediately
but when she did it was severe.

I've had 2 relapses since 2011. One was 9 months. The latest one looks like it is only going to be about 5 days but
I've taken extreme measures to get back into remission. I have not injested gluten since 2010 initial diagnosis.

Believe me when I say you don't want to go backward with this disease. My reflares were caused by stress, eating
too many GF chips and too much GF processed foods and the second reflare I was eating too much dairy.

I am very blessed that in between these times I've had many years of doing well.

Paul--stay encouraged. Things get better.

Paul--there is a B vitamin that a lot of us take. It is Thorne Methylguard. It is a more absorbable form of B vitamins.
I think it can help neuropathy but perhaps TEx can chime in on that.

Note to the men: I think the GlutenDude website is a good resource for the men.

Brandy

[tex]

As Brandy suggested, I'll point out that some doctors prescribe a vitamin mix for diabetics who have peripheral neuropathy. The product is called Metanx, and it's the active forms of vitamins B-6, B-9, and B-12, in a special ratio. I took it for about 6 or 7 years, and watched the price triple. Fortunately Thorne Laboratories introduced a generic version after the patent expired. It's still expensive as vitamins go, but it's much cheaper than Metanx, and it's a close match to Metanx (as far as the ratio of ingredients go). Methylgard is somewhat less potent than Metanx as I recall. They also make Methylguard Plus which is at least twice as strong, and this is what I take (one capsule per day). It works fine for me and many others who have either peripheral neuropathy, methylation issues, or endothelial dysfunction. It also boosts cognizance and memory.

Tex

[brandy]

I also take the methylguard plus (1 pill per day)
I don't have neuropathy but it helps me with memory.

[tommyboywalker]

Great thread for both Paul and myself!

I am taking a similar vitamin B mix because of my polyneuropathy and CRPS (both nerve related) but I will definitely look into "Metanx" and "Methyl Guard"

As for me ever going back to gluten even after my Budesonide taper is complete, I am leaning towards never as all of you are recommending. While it sure would make life easier/more enjoyable to be able to eat gluten, but the evidence does seem to be pretty clear that with an MC diagnosis, I will always be sensitive to gluten, even though my Enterolab testing show only a marginal sensitivity to it.

I have seen a few folks on this forum that have been able to go back to their regular diet and are doing okay but more that eventually have relapses and I tend to agree that it isn't worth the risk. Over the past year since diagnosis, I've gotten pretty good at shopping, cooking and baking gluten free and have found that it isn't quite as restrictive as I originally thought it would be. Anyways, this is all great advice and I sincerely thank you for it.

Brandy...."Glutendude" is a great website and one that I had not explored before. Now bookmarked and thanks for the tip!

Paul, keep us posted on the Budesonide plan that you and your consultant decide on and how you are doing with it. Best of luck.......

[Pebbledash]

Hi all,

Just to let you know that I am scheduled for a phone consultation with my gastro tomorrow.

Tommy, I intend to relay to her the information you provided on the more sustained course of Budesonide (since I immediately fell into relapse after my initial course, one year ago).

Also, FYI Tommy: I was diagnosed as Celiac about 8 years ago--when I didn't heal on a GF diet, they then tested for MC. My celiac disease was diagnosed first through blood tests--two separate antibodies were sky high. I was told, by my doc, to continue on a gluten diet until my colonoscopy/endoscopy so as not to compromise the result. Of course, my villi were damaged and celiac's confirmed. I guess what I am saying is that if they run the initial blood tests for you, they are usually a pretty clear indication you are celiac.

Thanks for all the amazing feedback and support everyone.

Best
Paul
PS I'll keep you informed

[jlbattin]

I was diagnosed in July of 2014 with microscopic colitis and given budesonide............I was on it for over a year..............I took it at the recommended dosage until the diarrhea stopped (I also cut out all gluten, dairy, and soy at the same time)........as the stools firmed up, I lessened the dosage..........when I felt like I had some good healing under my belt and things were under control, I was taking one capsule (3 mg) about every 4-5 days for awhile so I wouldn't have a relapse when I went off of it. I went off of it without any difficulties and have been able to maintain very well.

I did have a relapse a couple of years later around Thanksgiving ...... I made the mistake of bringing gluten back into my kitchen because I was having company and I made homemade chicken and flour noodles (for my guests), a couple of pies, etc., and I went back on the budesonide for a short period only to get things back under control.....probably less than a month.

I now control any relapses I have (and I do have them periodically due to cross contamination eating out or something that doesn't agree with me or stress) with Immodium and a clean diet. I have an emergency supply of budesonide but haven't needed one for a couple of years.

Diet is the key. Figure out what you can eat and stick with it.

Good luck to you! There is a rainbow at the end!